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Sunday, 21 October 2012

As most of you will know, I spoke at the October 20th Rally in Hyde Park yesterday.

I've been ridiculously ill and am waiting to go back into hospital for yet more surgery. For weeks, all I've really done is stay in bed being sick and writhing about, or attend bizarrely important stuff. I don't know if I can sum up how very odd that is.

My amazing GP allows me the meds I need to get through it all and I get unsteadily to my feet, pull on a frock, paint my puffy, tired face with an inch of make up and somehow transform into confident, insistent campaigner.

Yesterday, my twitter account was never quiet as hundreds of you thanked me, but it's an enormous privilege. It really is.

The life that so often seeps away from me has so much purpose. Every single time one of you tells me it gives you hope, it gives ME hope. The talents that sat dusty in my mind can be used for a great good and that is a truly amazing thing. I'm privileged that you let me be your voice and that others have been so generous in facilitating that.

To that end, a HUGE thank you to Brendan Barber for asking me to speak and to the TUC generally for supporting our campaign at many events and conferences now.

So, here's the video of my speech yesterday, and a transcript. Another HUGE thank you to James Albury (@alburyj) for recording it and to Steve Sumpter (@latentexistence) for posting it t youtube for us.

Friends, every last one of you that marched today believe in
one thing above any other. Justice.

You couldn’t sit at home while injustice and exploitation
are closing in on us wherever we look.

You are the faces, here, today, of so many millions more who
are shocked and frightened by the careless way this coalition of clowns are
ripping our communities apart.

But there is a casual cruelty taking place that is so
inhumane, so calculating, right now, here, in the UK in 2012, that it shames us
all.

When you get home tonight, home to every corner of our
nation, tired but exhilarated, weary but filled with pride – When you see the vast, defiant crowd, speaking with one voice, I beg
you, to remember this :

For every one of you who marched today, a seriously
ill or disabled person will lose the Disability Living Allowance they rely on
to live with dignity and a little security.

This parliament of fools use numbers lightly. They count
their losses in billions, their debt, in trillions, those thrown on the
scrapheap of their incompetent policies in millions.

But THIS - this here, today - is what half a million people
look like.

But there’s more :

A million more - TWICE as many as you marching here today -
will be “reassessed” by the French IT company, Atos as fit for work. Their only
income ripped away on the hunch of a few millionaires. Every single “report” or
“committee” or “enquiry” into Work Capability Assessments have found them
“Unfit for purpose”.

Coroner’s are reporting this “reform terror” as cause of
deaths. Doctors demand WCAs are withdrawn immediately. Appeal tribunals warn
that they are swamped to crisis point and beyond.

Hundreds of thousands of profoundly disabled children will
see their support cut by an impossible 50% while Osborne’s “Bullingdon Budget”
gave millionaires £40,000 extra. Each.

The Independent Living Fund – Scrapped

Severe Disability Premiums – Scrapped

Social Care packages - slashed

They are not numbers
Mr Cameron, they are LIVES!

They are our mothers; our brothers;
our daughters and sons.

Disease or Disability can strike any one, at any time.

We are the sick and disabled people of
the UK, so under threat are urgently crying for help against the wind, like a drowning man.

And so, I’d like to leave you with
the words of Edmund Burke :

”Justice will NOT
be served until those who are unaffected are as outraged as those who are.”

PLEASE, STAND WITH US, SPEAK OUT WITH
US, WE NEED YOU.

PLEASE get outraged, because sick and disabled people in the
UK need you as never before.

Sunday, 14 October 2012

I read some very good articles this morning about immigration, the economy and the current demonisation of the poor.

All good articles, all making sensible points, all entirely ignoring the very predictable course of history.

One was by Jon Cruddas, wrestling with the confusion over the rise of immigration as an issue, rumbling through, late in Labour's third term. It is and became an issue as our financial models failed. Just as it always does. We can call it housing, or education or health, but it's real name is iniquity. This from the Ragged Trousered Philanthropist, written over 100 years ago might have been taken directly from the Daily Mail as middle England sips coffee over the Sunday papers this morning,

"Wy, even 'ere in Mugsborough (note the Dickensian name)...We're overrun with 'em! Nearly all the waiters and the cook at the Grand Hotel where we was working last month is foreigners.""Yes," said old Joe Philpot, tragically, "and then theres all them Hitalians horgin grinders an' the bloke wot sells 'ot chestnuts: an wen I was goin 'ome last night I see a lot of them Frenchies sellin hunions an a little wile afterwards I met two more of 'em comin' up the street with a bear"

As the ruling classes at the turn of the century faced the financial collapse of their own mismanagement, papers of the day quickly rushed to blame immigration and an over-reliance on imports for the dire "Friscal Policy" of the day. In fact, then as now, as the history books report, it was basic, out-of-control greed, an out of touch and elite government and a rush to protectionism that was crippling the country.

In 2000, my husband and I crossed America on a motorbike. From New Orleans to San Francisco, we saw America as few are able. The vast emptiness of the country is impossible to convey until you spend endless days, riding a long, straight road through the plains of Oklahoma, the long corn grasses bent to the wind, unfettered by 1000s of acres of emptiness.

On through the arid deserts of New Mexico and Arizona, as days of emptiness became weeks of emptiness. a ghost town here, a redneck with a big old gun there. We rode and we rode and we rode, through the Bayous of Louisiana to the mountains of Colorado.

As we rode into and out of cities with names redolent with whiskey fumes and oil, the pattern was always the same. The beautiful Antebellums and sprawling ranches gave way to the suburbs, each mile leading further into poverty. Shanty towns shaming the myth of a Land of the Free. Vast wealth turning, in the blink of an eye, to desperate social decay. Burnt out liquor stores, heroin dens in the 5 and Dime, corrugated roofs and children playing in the street with no shoes. White to brown to black.

As we rode weary and educated into California, two vast billboards lined the way;

"Don't let the Immigrants Take our Jobs" "This Country cannot take any More Immigrants"

In a continent where I'd just seen for myself how easily Greece, Italy and Spain could all comfortably be dropped with a negligable impact on clean air or resources, it was not the environment these billboards were safeguarding. It was the endless miles of empty lives and empty towns between the California state line and the glitz of Frisco. The Mexican minimum wage workers, the Hispanic waitresses working for tips in corporate style chain restaurants, stuffing the wallets of Mr MacDonald and Mr Taco-Bell with ever increasing profits were living hand to mouth for hundreds of miles in either direction. Poverty, greed and exploitation bred what they always breed. Resentment. That resentment turned cleverly on the very people the most exploited, the most poor, by the most greedy.

I read articles this morning, mulling over our economic crisis.

But it is the same crisis that finished off every empire from Rome to Victoria. It is the crisis of greed, unfettered, destroying itself as it has throughout history. Greed and Corruption, consuming the very resources it needs to grow.

The Roman Empire, The Florentine Renaissance, The Tudor Enlightenment, The French Revolution, The Boston Tea Party, World War 1 - every time the same story, an effete and bloated ruling class, turned mad through greed and corruption. Every time as the people starved, every time as they died in vast numbers, every time, in the end, they finally saw the truth and a new order was formed.

We can argue on a pinhead, rearrange the deckchairs on the Titanic, but in the end, we are doing what so many did before us. We have all the ingredients of a deep, dark crisis : Our media are not reporting it in anywhere near the detail they are aware exists. We have great pockets of displacement as the Arab world rocks on it's axis and Europeans flee austerity measures starving their children. We read daily propaganda - every scrap of evidence tells us that it is so - turning neighbour on neighbour, rich on poor, white on black, sick on healthy, few daring to put the blame where it belongs, for what will take its place? If we blame the very people that own the financial world, they will destroy us. "For each man kills the thing he loves".

We know without doubt that we are living in a time in which those in control, those tasked with the enormity of leading a world through crisis are inadequate to the task. They took the wrong path. They made the wrong decisions. they chose austerity when the world desperately needed nurture. Worse, they convinced us that there was No Alternative and now we believe them. We ignored the history books, we succumbed to the oldest arrogance in time.

We knew that austerity would not work because we tried it in the 1930s. We tried it in every one of the Revolutions and Power Swaps this world has ever known. We always do, because the owners of wealth demand it. But it always fails. It always fails because it demands that those with the least pay the most. That poverty becomes destitution, that we turn our backs on the vulnerable and learn to hate them instead. We watch our neighbours in Greece face death and starvation, watch fascists become a political force as they always do when the social fabric falls away.

It always reaches the point where those asked to starve to support the decadence of the banquet hall have no more left to give. Usually there is war. At the very least there is civil unrest and despots fall - we have seen it in the middle east and North Africa for a few years now, across Europe too.

We are seeing the world start to realise, the devastating realisation start to dawn, that after all, they could not re-write history. The IMF admit they were wrong, the OBR that they were far too seduced by the forecasts of optimistic austerity junkies with an axe to grind.

We see Europe start to attempt to slam the brakes on an austerity tanker that may just be too big and too burdensome to turn around. The depression may be too deep, the lost jobs and lost futures and lost hope may never return. We see corruption exposed in every high office and still they stick to the well rehearsed lines, as every civilisation has from the beginning of time

"We must not spend on you. You are too populus, too lazy, too undeserving, you have bought this on yourselves, you scroungers and feckless, drunken thieves."

And as every civilisation from the beginning of time, the people bear all that they can bear until they can bear no more.

Our government knows it. Europe knows it. The Middle East knows it.

And they are all desperately hoping that we live in the eye of the storm for as long as it takes.

Friday, 12 October 2012

The whirlwind of conference season has passed relatively harmlessly for another year and the lid has been firmly locked on those irritating, grass-root humans that invade a politician's alien world once a year.

But just before that particular circus gave those of us that attended emphysema from so much smoke and mirrors, David Cameron reshuffled his cabinet of clowns.

Us sick and disabled people, whose political-football-lives can in some cases be totally controlled by the actions of a few MPs, got a new "team" to play in the semis.

A tough, Liverpool lass, again, went to a state school (though seemingly a glowing example of one of the first Academies) who believes in SMEs and family business. She was working at the DWP anyway, under Chris Grayling. She has already had several meetings with Kaliya Franklin (@bendygirl) and arranged a meeting with Ian Duncan Smith at Tory conference. As magic-dust would have it, she is also Kaliya's MP. So far, she has listened very carefully to everything we have to say.

But the new "Grayling" - Minister for Work and Pensions - is a Mr Mark Hoban.

A comprehensive boy Tory with a strong history in finance. In my experience, Tories who went to comprehensives are the most sensible ones. Usually one-nation Tories who can ground conservatism in it's real values through experience. If nothing else a finance guy would surely look at the kafka-esque farce that is work provision, outsourcing and welfare policy in this country and believe in seconds that almost all of the money could be better spent? Spent on actually doing what we're supposed to be doing with every last pound of taxpayers money - supporting and enabling people?

So far, I've heard two comments from Mr Hoban in his new role. The first conceded that it is, indeed ridiculous - as we've argued all along - to make cancer patients look for work. After all, it's not a tricky one for actual human people to see that that is a spectacularly ludicrous thing to do, is it? Could it be that Hoban is actually human? A human Tory? I'm struggling with the concept, but time, I suppose, will tell.

Hoban admits that the WCA process is not working. Too many people are being failed by the system. It is inaccurate. This in itself is an enormous step forward. At least Hoban acknowledges there are problems not yet solved by Harrington.

However, I wanted to explain to him about "evidence" and his suggestion that the claimants themselves have a duty to provide all the evidence they can when they first claim. Hoban thinks that if we only submitted all that evidence in the first place, we wouldn't be declined benefits and have to appeal at all.

So, Mr Hoban, as an introduction, I'd like to paint you a picture.

Imagine Bill. Bill has worked for 36 years as a postman, but now his spine is crumbling and there's nothing more doctors say they can do for him. For years the pain had been getting worse and worse, but he'd delivered his letters until he could barely walk. The Post Office had done all they could to keep him on, finding him an admin job he could do from his new wheelchair and reducing his hours, but the pain became too much and Bill reached the point where he simply could no longer work.

Imagine that day, Mark Hoban. In excruciating pain - pain he had no concept even existed in his "old life" - Bill stays home on his first Monday morning for 36 years, sits at the kitchen table, on his own, suddenly in a wheelchair 54 and unemployable.

His world is falling apart. Suddenly his "job" is doctors appointments and surgeons appointments and scan appointments and x-ray appointments and tablets in the morning, tablets with lunch, tablets with dinner and tablets for bedtime.

And surviving the pain.

Bill finds it extraordinary that just pain alone takes so much effort to survive in this new life.

On the kitchen table is a looooong claim form for Employment Support Allowance (ESA). A claim for sickness benefits. Out of work benefits. Bill feels ashamed of it.

He just wants it done and gone. He answers the questions honestly but with little detail - he doesn't know what a descriptor is or the secret code of letters that magically allow an oh-so-rare- successful claim. He doesn't know the traps that lie in wait for him on that form!! Why would he? He thinks it's enough to say his back is crumbling and he suffers terrible pain daily and now must use a wheelchair. It isn't.

Why would a normal, human person think that wasn't enough?

He sees a sentence about "submitting evidence" and cringes at the suggestion he is somehow under trial for breaking down. He thinks for a minute, searches out an old repeat prescription form that proves he relies on morphine simply to get out of bed, signs the form, seals the envelope and does his best to forget all about one of the hardest days of his life. The day he had to beg for help.

The following week there is another 40 page form, this time for Disability Living Allowance, but Bill doesn't know you have to say different things on this new form to qualify. He thinks it's enough to say his back is crumbling and he suffers terrible pain daily and now must use a wheelchair. It isn't.

The following week there is a social care assessment that concludes Bill doesn't need any help at night. In deep deep shame, Bill whispers, barely audibly how he will get to the toilet now his daughters have all left home? The assessor says not to worry, they'll provide him with nappies, he won't need to go to the toilet at night any more.

Broken and desperate, at the lowest point in his life, Bill starts to get letter after letter telling him he is fit for work, not eligible for any support at all. No ESA, no DLA, no care package, despite facing gradual paralysis and a dependent future.

Now think about appealing Mr Hoban. Imagine that you are Bill. Would you even have the strength to appeal? Might you just believe that they are right, these terribly official, medical sounding "experts"? Might you be so exhausted and beaten down that you simply give up? Might you feel you just can't face the shame of begging? Begging Mr Hoban?? After a lifetime of work and paying tax and "striving", we make a million Bills BEG for support? How many do you imagine don't appeal at all?
At appeal, Bill has an advocate, recommended by the local CAB to steer him through the whole process of hisappeal. (Incidentally, millions will now be denied even this justice as legal aid has been scrapped for benefit claims and Advocacy services face huge cuts.) They explain to Bill that "evidence" means letters from your consultant or GP or other people who know you well. That he can't just say "his back is crumbling" but that he he has osteoarthritis and osteoporosis. They explain that he must answer each question in full sentences and in great detail, even if it means constantly repeating himself.

They explain that he must lay himself totally bare on that form and admit in the tiniest detail just how disabled he has become. To strangers. He must admit to the incontinence, nappies, suicidal thoughts, all of it, right there on that form, exposed. You have to write things you may never have told another living person.

On the day of his tribunal, a judge took one look at Bill, one look at the medications that came tumbling endlessly from the carrier bags Bill came in clutching, as instructed and awarded him ESA at the highest rate.

The DLA tribunal is exactly the same and finally after 18 of the worst months of his life, Bill can hope that the nightmare is over. He can rest, finally grieve for the life he lost, focus on what his new life might be.

But just 5 weeks later, a brown envelope containing an ESA claim form falls through the door and the whole process starts all over again. Bill will never be free of it now. This is his life. Assessment, rejection, fear, long waits for an appeal, winning an appeal and then assessment all over again.

So, Mr Hoban if you've read this far, and you are even a tiny bit human, tell me hand on heart that you're not horrified by Bill's story? And the millions of "Bills" just like him. How is this in any way an efficient use of taxpayer's money? You may as well have written a chemistry degree and told everyone to sit the final papers. The current system is almost exactly that random with around 94% of new claims found fit for work of some kind? As an outsider, I can see why you might walk in, look at an overview and conclude "Ahhh, they're not sending in enough evidence when they claim" but the truth is rather different. They don't imagine they need to prove anything at all until the full inquisitorial nature of the system becomes clear to them. They are giving their word.Why would any, honest, human person think anything else?

Wednesday, 10 October 2012

Today, we are told that David Cameron will use his Leader's Speech to Tory Conference to re-iterate his commitment to Compassionate Conservatism.

I am disgusted by this.

Here are some quotes :

""My mission from the day I became leader was, yes, to show the Conservative Party is for everyone: North or South, black or white, straight or gay," he will say.

"But above all to show that Conservative methods are not just the way we grow a strong economy, but the way we build a big society."

"That Conservative methods are not just good for the strong and the successful but the best way to help the poor and the weak and the vulnerable."

Mr Cameron will also remember his son Ivan, who had cerebral palsy and died in 2009 aged six. And he will pay tribute the work done by Paralympians - including swimmer Ellie Simmonds, whose gold medal he presented in September - in removing stigma from disability."When I used to push my son Ivan around in his wheelchair, I always thought that some people saw the wheelchair not the boy," he will say. "Today, more people would see the boy and not the wheelchair - and that's because of what happened here this summer."

He will add: "Because it's not enough to know our ideas are right. We've got to explain why they are compassionate too."

Well, Mr Cameron, that sled faded into the snowy outreaches with the huskies and hoodies and disabled people you used to get your slice of power.

You used us Mr Cameron.

You said you understood, you said you valued our NHS, you said you would protect the vulnerable.

You lied. You lied like a cheap watch you disgusting, cruel, ignorant, uninformed, ideological prat.

Here is a list of your "compassion" - your incompetence I will leave for another day.

Halving Support for disabled children,

Scrapping the "Youth Premium" that ensured independence for the most profoundly disabled children;

Scrapping Crisis Loans;

Cutting housing support for disabled people;

Cutting council budgets so hard that they cannot provide social care to some of the most vulnerable people in our communities;

Introducing PIP to replace DLA with the aim of cutting 500,000 vulnerable people from the figures without a single assessment;

Introducing unlimited, unpaid work for those with significant illnesses or disabilities;

Cutting all benefit support for sick and disabled people appealing their ESA decisions;

Lying to the public about Work Capability Assessments and failing to make them fit for purpose while disabled people suffer and die;

Encouraging hate crime by constantly feeding the media "scrounger" stories about the sick and disabled;

Closing Remploy factories, throwing over 1500 working disabled people on the scrapheap; Exaggerating fraud rates and implying all sick and disabled people are "feckless, festering, stock";

Lying about the levels of disability benefit fraud repeatedly and feeding politicised press releases to the media;

Turning neighbour on neighbour and fostering a climate of hate towards the sick and disabled; Forcing cancer patients to the jobcentre;

Privatising our health service despite promises that you would protect it;

Rationing access to NHS treatment;

Cutting respite care despite promising you understood and would help;

Suggesting in PIP that a sick or disabled person can "bathe" if they can wash above the waist only;

Re-classifying paraplegics as "fully mobile" if they use their wheelchairs too well;

Blocking improvement in Atos assessments;

Lying about Workfare repeatedly to the press;

Falsifying internet documents to make your workfare lies look like the truth.

And this is just disability!! You lying, dangerous, smug, uninformed piece of fluff.

So don't you DARE Mr Cameron. Don't you dare try to re-claim what you never had. Don't you dare invoke the memory of your disabled child. Don't you dare tell the country that because your Dad worked with a disability, everyone can. Don't you dare tell me about your compassion, I see the effects of your "compassion" every day.

I see people found fit for work dying days after their assessments. I see the stories of profoundly disabled children left in their own filth, their parents wondering how on earth they will pay the rent or buy food. I see the desperate pain of carers simply unable to cope any longer under this onslaught of ignorance and cruelty. I see the stories of the many thousands reliant on food banks, the disabled people in wheelchairs begging on the street, the ex-servicemen who lost limbs defending OUR country told they aren't entitled to any support in return, the vilification of those who suffer substance or alcohol abuse or mental illness, the hospices closing, the women's refuges shut, the charities folding as you cut their funding.

Tuesday, 9 October 2012

Following up on my post about working with a long term illness or disability, I'm writing today to ask for your help.

I've devoted many months of energy to fighting the welfare bill but there is another fight I always believed we must fight.

The Great Employment Battle.

The stigma and sanctions and insults of the current welfare to work debate have made the very word "work" hold a certain terror. No more an aspiration or a dream, something we hoped for more than anything. Now, if you have a significant illness or disability, work is a threat, with the ultimate punishment of unlimited, unpaid labour.

I've read endless reports and policy papers discussing us and I find it hard to believe anyone with a fluctuating condition or complicated lifelong disability ever went anywhere near the processes. I see a bunch of zealous blue-sky-thinkers sitting around a table, designing a system with the worst of humanity in mind.

A lot of them don't seem to like us very much. They think we're "too stupid" (Field) "festering feckless stock" (Freud) I'm fairly sure Carol Black compared sickness and disability to a typhoid plague in a recent paper I read.

And because they don't like us very much, don't know who we are, don't live our lives, they do the only thing they know. They pick up a bigger stick to hit us with each time they get round that table.

I set out to shine a light on our lives and this is surely one of the most frustrating areas of living with a long term condition? It always was for me. I thought endlessly about it. How the benefit system was designed to keep me out of work. How no matter what I did, the sanctions of finding work were all so punitive, I could never dare try. The unpredictability of my attendance, the variability of my symptoms all meant sanctions just trapped me.

Why? Because all the schemes and policies were designed with the assumption that I could "work" like anybody else. I can't. Hence I can't work. The work is not flexible enough, attending an office reliably is too difficult, the business is given no protection from government for any extra costs they might incur by employing me. I don't mean for adjustments, I mean for extra time off or annualised hours contracts.

Businesses are neither incentivised or mandated to employ people with disabilities. No-one has ever had a sustained conversation with business about the benefits of employing people with long term conditions and disabilities, asked for their co-operation, built a coalition of companies prepared to make this a priority.

No-one has looked at our skills and asked how we might contribute to society - how we do contribute, every day - they have simply looked at the economy and asked why we are a drain on it.

And that's the key "When you design a system only to catch scroungers, it is the genuine claimants that suffer for the few. When you design a system to enable genuine claimants, it's easy to see who the scroungers are" (Kaliya Franklin)

Why can't we speak with our own voice on this? I think some will be sceptical, they will say that by entering this debate, we are conceding defeat. But that's only if you see the very nature of work as a battle.

If we reclaim the work debate, don't we have a unique chance to shape it? Don't we have a way of showing all these disdainful designers of our futures why and where they have got it all so very wrong?

We can research, we can look for interesting reports from other countries, we can think about our own barriers to work and design our own solutions. Whether or not anyone ever truly develops them in the full spirit we present them, they will be there, for the record. We will have had a chance to answer all those judgemental, ignorant voices. Not spoken for, not spoken to or at.

We can tell our stories, just as we have before. We can write passionately about our own attempts to work and how the system held us back and why. We can tell twitter and Facebook.

It's a brave thing to do. We've told our stories about benefits before and it was scary. By laying ourselves bare we knew we were taking risks. Telling our work stories in this climate holds a worse fear - that any evidence we have tried to work at all will remove our security - but that in itself is exactly why we have to tell them. Just the fact that we are frightened to, says everything anyone needs to know about how punitive and degrading the current system is.

If you want to join me with this, please, use the hashtag #DisabilitysNotWorking
Post on Facebook under the title "Disability's Not working"
Or write a Disability's Not Working blog or article.

Look for papers and research - the good and the bad. The more we know the more confidently we can challenge. Share anything you find or send it around a bit on Twitter and Facebook so that we all start to become as expert in sick and disabled people working or not working as we became over the Welfare Reform Bill 2010

But the last, most vital thing is to get the message through that some people will never "work" in the sense they mean at all. They will never be "economically active" or "sustainable" or "self-sufficient" or any of the other dogmatic, de-humanising labels they invent to coat the disability stick they hit us with.

But they will almost certainly "contribute" Some will spend 90 hours a week caring for an adult or child totally reliant on them for every basic human need. Some will write great novels from their beds or paint great art using their mouths. Some will philosophise and others will make beautiful music. Some will counsel, using their experience to help others through the incredibly difficult times long term illness inevitably bring.

Any system that recognises contribution must include all contribution. Reciprocity and Responsibility work both ways, whether a "Big Society" or a "Good Society" or "One Nation" they are simply empty words unless we find a way to value the many unseen, daily contributions that keep our country rich and safe, and better.

To politicians and media and think-tanks I say : If you tell the country we contribute nothing, that we are nothing, that we're worth nothing, can you blame them for believing it? Recognising all contribution tells the public that we really are "all in it together" and might just be a first step in showing the true value of our social security system, not just it's worth.

Monday, 8 October 2012

As many of you may remember, I ran a consultation on this blog some time ago, asking about work with long term fluctuating conditions or disability. It received over 250 responses.

Most people said they would like to "work" but that they either could not possibly now hope to work at all or that "work" as understood in our society simply does not suit or accommodate people with mental or physical illness.

However, five ideas came up time and time again :

1) Working from home - In 2012, many commented that it is ridiculous that businesses don't do more to allow people with illnesses or disabilities to work from home. With email, Skype and video conferencing, intranets and disability aids, it is perfectly possibly - indeed cheaper for many businesses - to facilitate home working.

However, the concept of "part time" or "full time" work as understood by most businesses does not fit with long term, unpredictable conditions. Any work would need to be utterly flexible, allowing the employee to dip in and out as their conditions require. Some might work well very early in the morning but be useless by midday. Some might be able to work for an hour or two here and there. Some need work that they can do at night when symptoms make sleep impossible. Any work would need to be utterly flexible over a 24 hour period.

It was felt that many had great experience and expertise from a lifetime of work that was now going to waste.

Employers were as much a barrier to work as the conditions that make work so difficult. Much more had to be done to include businesses in any conversation about taking on sick or disabled employees.

A "Work Bank" allowing businesses to upload overflow work from peak times (ie data entry, paralegal, accountancy, design, etc) was suggested. Business could plan for busier times, and those looking for flexible work could log on, accept certain hours or chunks of work and "bank" hours towards an annual work goal.

2) Micro Businesses - Many felt that they had developed new skills since becoming chronically ill. Hobbies had become slightly more, but the benefit system simply didn't allow them to develop these into viable businesses. As soon as they started to earn any small income from these talents, they found themselves unable to develop them as they simply weren't confident enough to lose all benefits.

Many suggested a kind of small business co-operative, where those living with long term conditions wanting to develop small businesses could come together in an area and support one another. Some might be better able to take product to market, some might have great marketing skills, yet others might be creative but unable to physically participate.

A combination of small micro-loans, Access to Work, networking with others in the same position, business support and flexibility within the benefit system might allow these businesses to flourish. Might. But crucially, there needs to be a totally new approach to benefits and work that allowed space and accepts that those with significant barriers to work need a much less punitive benefit system with much less draconian marginal tax rates and sanctions.

3) Education and training - Often, when someone becomes chronically ill or their impairment means that their current job is no longer viable, they are simply thrown on the scrapheap. Every study shows that once someone with an illness or disability is excluded from the job market, it is many times harder to re-enter.

A real commitment to find other suitable work within an existing company, supported by Access to Work, re-training or further education where appropriate could mean that someone never becomes excluded in the first place. This should be a partnership between the person with barriers to work, employers and government. All too often it has been a lonely path between a supportive employer and a willing worker, but the business simply cannot carry these costs alone. A little early intervention from Government could save years of benefit payments in the future.

4) "Falling off a cliff" - For decades our benefit system has become more and more punitive with tougher sanctions and limitations. The more dependent on social security someone is, the more impossible it becomes to consider any kind of paid work. Earning disregards (the amount you are allowed to earn before losing huge chunks of support) are ludicrous - often as little as £20 a week. This, sadly, is unlikely to improve significantly under Universal Credit.

Successive governments were seduced by the idea that those with long term illnesses simply needed to try harder, yet at every turn, politicians created their own barriers to work within the very system supposed to enable and encourage.

If someone stands to lose £6,000 a year in benefits by working, they need to know that they can earn at least that amount - reliably -before they could have the confidence to "go it alone". If someone will lose £10,000 or even more, yet could only ever reasonably expect or hope to earn a few thousand, many are excluded from even trying.

Politicians must accept that :

A) Some will simply never be able to "work" again at all.

B) Some will never be able to work again in the way society expects.

C) Some will always be excluded from the workplace despite a willingness - even eagerness to work.

ALL work should be valued. Anyone with a significant impairment should get extra support. If they have a diagnosis that means they will always face difficulties sustaining consistent work or face barriers to working, any work they feel they can do should be supported.

If someone can only ever manage a few hours from home, or can only manage to volunteer for a few hours here and there, that effort should be rewarded too. If we truly want a "good society" or a "big society" or "one nation" then we must value all contribution.

Politicians should consider a "volunteer credit" - available to those discussed above, carers, parents who support their children's school, or any other volunteer who is for whatever reason unable to "work" traditionally. The credit could boost final pension levels.

5) Despite all of the above, many with long term fluctuating conditions asked what on earth they were supposed to do during very bad times. All of the above suggestions meant that there would be times when they were simply unable to "work" and would be left high and dry with no salary. The "rollercoaster" effect had led many to give up on the idea of work at all. One minute self sufficient with some salary, the next plunged into poverty and fear, faced with a welfare system almost impossible to re-enter, the stress of re-applications, tribunals, appeals. Ironically, the more sanction we have developed, the less likely those with long term illnesses are to feel they could even attempt to work.

Those with long term conditions that will always face a significant barrier to work should see some of the tax they pay go towards a "lifetime fund" - heavily subsidised by the employer and Government (just as a pension is) that they can dip in and out of when illness makes it impossible to work. It might go back to the employer to help them cover long periods of illness. It might provide a small extra income during very difficult times. It might pay for adjustments when they become necessary. For the relatively small cost to the employee, business and government, it would be vastly cheaper over the long term in wasted benefit payments and recruitment or lost work hours.

Business have been largely absent from these discussions for too long. However, there appears to be a real appetite to change this, just a lack of suggestions on how. Tax incentives could encourage business to take on more people who suffer from long term conditions. Targets for employing a certain % of long term ill or disabled people are used effectively in many other developed countries. Government effort could be channelled much more into supporting business to set up schemes such as those detailed above, or "cover" business against times when the worker simply cannot work, rather than decades of social security support.

So, with all of this in mind, could I ask you again, to leave your comments below? If you would like to answer the questions below, it might help to add a little structure, but if not, feel free to say as little or as much as you like and of course, make any further suggestions you have. Would any of these suggestions help you? What is your condition, How long have you had it for? Do you have other suggestions that you think could work?When did you last work? What did you do? How long did you work for?Why did you have to stop working? Would you like to work, however little?Are you now totally unable to work?Does the benefit system hold you back from working? What fears do you have about schemes that aim to do more to support those with long term conditions into work? What, if anything, interests or inspires you?
The biggest problem has been politicians who conflated long term illness with worklessness. The two are not the same. Please, if you can spare a few moments, use this thread to explain to politicians why.

Many thanks.

UPDATE : Some have suggested that the list of questions at the end may make some reveal too much personal information. PLEASE don't feel pressured to reveal anything personal at all.

Wednesday, 3 October 2012

It's probably exhaustion, but at the moment, it feels like catharsis. Relief.

Long term readers will know that I've been to every Labour conference since 2009 with the sole aim of telling ministers and MPs about the horrors of the WCA. Lately, the Tories have given me abolishing DLA, the ILF, the SDP and so much more to explain and expose. I've chased Steven Timms when I could barely walk. I've charmed and flirted and wangled my way in front of Yvette Cooper, Jonathan Shaw, David Miliband, Peter Mandleson, Ed Miliband, Anne Begg, Margaret Curran, Jim Murphy, Michael Meacher, Liam Byrne, Anne MacGuire and no doubt countless others I've forgotten.

Oh the disappointments. 2009 when I may as well have been whistling in the wind. Not one responded to my follow up emails.
2010 and the "Responsibility at the top and the bottom" disappointments
2011 and the "I met a man who met a man" disasters resulting in the word "disability" being totally airbrushed from conference. Well, until Kali and I handbagged Ed Miliband in a daring expose....

And now it's 2012. In one year, campaigners produced the Spartacus Report, the most read welfare report in history. We defeated the Conservatives in the Lords 8 times over the Welfare Reform Bill, we worked with the BMA to ensure that they voted to scrap the Work Capability Assessment. We watched and respected and revelled in the Paralympics whilst organising devastatingly effective protests throughout, shining a light on Atos Healthcare who administer the test. We worked with journalists to ensure that our campaigns were regularly on Channel 4 News, and in the Guardian, the Mirror, the Independent, The Times - hell, even the Spectator. We guided and advised Panorama and Dispatches as they exposed the horrors of our situation to ever wider audiences.

There was more - so much more - and this year, disability and the attacks we face are front and centre at Labour conference.

First the man from Bournemouth CLP who brilliantly pointed out that "Disabled people are to Cameron what single parents were to Thatcher.

In every list of Tory disasters, speakers made sure sick and disabled people were there. At last

In every commentary, journalists made sure we were there. Here's La Toynbee this morning :

"Watch that party [the Conservatives] writhe as One Nation Labour encapsulates everything divisive they do, from Cameron's tax bonus for millionaires to his cruellest cuts for the disabled......

An MP tells of the mother with cerebral palsy twins in her surgery this week losing disability benefits."

And even Ed, leader of the party, made sure we were there :

"You can’t be a One Nation Prime Minister if all you do is seek to divide the country. Divide the country between north and south. Public and private. Those who can work and those who can’t work"

"You see I think it is incredibly important that to be One Nation we must show compassion and support for all those who cannot work. Particularly the disabled men and women of our country."

Please, I know politics is a strange, unfathomable game, but leaders make their once-a-year conference speeches in broad strokes. They are there to make the complicated clear, to laud the big beasts of the NHS, Education, the Economy or Housing. When disability makes it into a leaders speech, we can safely say we've broken through.

This year, when I zoom after Jon Cruddas on my scooter or catch up with Michael Meacher at a conference stand, there is recognition, understanding, concern, where other years there was discomfort and a shifty eagerness to escape.

We shone a light my friends, and now, no-one can turn it off.

Sure, there is more to do, so much more to do, but I say to anyone who will listen "There are 650 men and women in this country who get to choose. They decide all of our futures. I just need 326 of them."

No matter what we did, we had to break the consensus. We had to make sure that the opposition opposed. Just two years ago we had nothing and no-one. Today, we have a very different board to play on. Many will say it is not enough, and of course, they are right. But as a friend once said to me, "Don't judge on where someone is, judge on how far they travelled"

We have travelled a long, long, way this year. May every year see the same progress.

Wikio

Gadget

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.